Patient Care - comments needed!

[gwenllian111]

Hi

I'm writing a book about the care patients receive (regardless of disease). For example, being turned away at ER, doctors being unsympathetic, - or, of course, the complete opposite - have you received the best care you could ever have asked for?

I'd be very grateful for any comments you could pass my way.

Thanks!

Gwen

[mishb]

Will need to have a little think on this one

[Pete]

I've been fortunate in the care I've received from medical providers.

My PCP, Dr. Steven Draeger at OSU Wexner Medical Center in Columbus, is exceptionally perceptive. When I first visited his office (about a week before I was diagnosed with GPA/Wegener's), he realized that I was much too sick to have just an ear infection. He set me up with the ER ENT and I was admitted to hospital in short order.

The team at OSU Wexner Medical Center didn't know what to think when I showed up. I was admitted into infectious diseases as they thought I might have TB. The doctors and nurses there were exceptional. Kudos to Drs. Mike Chacey (Pulmy), Stan McClurg (ENT), and Ulysses Magalang (Pulmy) who ultimately diagnosed me. Two nurses, Cheri and Rob, were there whenever I needed them - which at night was about every two hours to bring fresh bed clothes after night sweats. Cheri told me that I needed to get up and walk every day so that I wouldn't get DVT (or the shot of heparin into my abdomen to combat DVT). Dr. Matt Exline (Pulmy) was my first doc that managed my disease. He was good, but inexperienced in treating GPA. I realized his inexperience when I joined this forum and began learning more about treatment protocols and the importance of having a GPA specialist. Dr. Exline was most gracious when I asked about a referral to Cleveland Clinic. As he didn't know any specialists there, he suggested that I self refer.

Dr. Alexandra Villa Forte, rheumy at the Cleveland Clinic, is another exceptional physician. My first visit to her in July 2012 lasted almost two hours. During that first visit, she wanted to know all of the details of my symptoms and history with the disease. Subsequent visits are marked by her taking all the time with her that I need. I have a written list of questions and concerns, and she takes the time to address every item and makes sure that I understand her instructions. She is responsive. If I call her office during the day, she calls me yet that day - even if it's well after office hours.

I don't think I've ever been blown off or disrespected by anyone who has helped treat my disease. As I said, I'm fortunate - and as healthy as the disease will allow.

[Alysia]

Hi Gwen,
the worst, in my case, were the ENT docs. I wrote it here : http://www.wegeners-granulomatosis.c...-ent-docs.html

as for other docs:
all my lung docs were very caring, searching to understand and giving me VIP treatment. my current lung doc enable me to come to him whenever I need, without waiting. I just have to come to his nurse's room, who already knows me, and then she phones him and say: the weggie lady is here, and then he let me in very soon. only the red carpet is missing

finding good GP was hard. the one I had at the onset of my wg, refused to continue treating me. I had several untill I found good one who is not afraid of my dx.

as for wg-doc, I am going to him privately, he allways finds time to see me at the same week I ask for. even if he doesn't have free time, he invites me after ot b4 his hours. he responds to my e-mail in few hours. he takes from me half the price he takes from others. he fought for me to get approval for rtx. he did case conference in the hospital about me to get to final dx. he smiles when he see me, and he knows to comfort my endless anxieties. he appologizes for mistakes he did in my treatment. (and he DID, big time).

I have more stories about eye docs, gastro docs, but so far, it is enough for today.

bottom line: being a weggie is getting a VIP treatment. mmmm the benefits of being a weggie....

[NikkiNicole]

I had a bit of an issue starting out. My PCP was AWESOME and she knew that what was happening with my "pneumonia" was NOT normal. She had seen in my chart that I had been in and out of the doctor the year prior with a "sinus infection" that wouldn't go away and had tubes put in my ears and now less than a month or two later was going through all this again. She ordered the ANCA test less than a month into this new round of being miserable. She started the ball rolling ........... but it rolled for awhile before anyone really took notice.
I saw an ENT who removed a lump in my neck and found cancer. He said No to Wegs.
I saw a rheumatologist who was BOUND AND DETERMINED that I didn't have Wegs. He was so quick to write me off when the cancer was found. So when I ended up back in his office he wasn't happy and STILL said no.
I got a second opinion from my WONDERFUL doctor who has begun treating me and making my life somewhat better.
Everyone was always saying there was nothing wrong with me. Go home. Get out of here. You aren't sick enough to have this horrible disease. Come back when you're on you're deathbed! Ok they didn't say that last one but that is what it was beginning to feel like.
I saw a pulmonologist who treated me like I was a hypochondriac. The first ENT did the tubes in my ears the year prior and said my cancer tumor was just a blocked salivary gland that would go away on its own. The second ENT seemed nice but he never wanted to go the Weg's route. A rheumatologist who said I wasn't sick enough (same rheumy another guy I know had who also said he didn't have his AI disease .... I've referred that guy to my other doc and he is also getting the treatment he needs), an oncologist/hematologist who is the most wonderful of the bunch.
But, it was a long bumpy ride.